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Saturday, September 30, 2017

I have debated whether or not to publish this post, and decided to do so because it details an experience that I think is probably shared by other chronically ill patients. This post mentions a comment that was made regarding suicide. Please know that if this topic is particularly upsetting or triggering to you, I completely support your decision to skip this post.

I have been having trouble making a speech in one of my classes, part of a required assignment. My speech is about juvenile arthritis. Ironically, because of complications stemming out of this disease and out of acute illnesses I have been facing, my ability to speak right now is very on-and-off, and when I can speak my voice sounds terrible and I have no ability to project.

"How long has your voice been like that?" one of my classmates asked me somewhat mockingly as we participated in a small group activity together. I had not previously spoken to this classmate and still do not know his name. I had just returned from the rheumatologist to attend this class, and given my extremely high pain level at the time, I had little patience for prying questions from rude boys.

"It's been on-and-off for about three weeks," I responded honestly, doing my very best to get the words out. Several sets of eyes were staring at me, awaiting my response. I had missed both days of this class the week prior, so people knew something was up. My voice is weak, and sounds strange, but I am still participating as much as I can. My classmate leaned back in his chair, smiling in the least friendly way you can imagine. What came next absolutely shocked me. He looked me directly in the eyes.

"I would kill myself if I were you."

There are so many responses that I have mustered up in hindsight, but in the moment all I did was stare. I did not respond at all, and had no idea what to say. I could not believe he said that to me, and even more than that, I could not believe that one human being would say that to another. Perhaps we should all be required to take an introductory class about compassion rather than English. I stared blankly at him, without even trying to form words, wondering if he realized how insensitive he had just been. I was absolutely appalled. I could not tell if I was angry, upset, or apathetic. He offered no apology. He turned to his computer and pulled up the webpage for our assignment.

I pondered this interaction for the rest of the class. I texted a friend to tell her what had happened, mostly just because I could not believe it and needed to type it out. I have experienced a lot of rude comments and insensitive remarks from classmates - I was diagnosed in middle school, after all. But no one has ever said this to me before, and frankly I did not think anyone ever would. I dedicate way more space on my blog to positive experiences with friends and even with strangers than I do to negative experiences, and I want to be clear that my experiences overall are disproportionately positive. In general, people are very kind and understanding, much more so than I think an outsider might expect. Still, there was something about this comment that rendered me unable to focus for the rest of the class period. I could not tell if it was his words or my medications making me nauseous. I could not think of why he might say something like that.

The class that this happened in is very small, and my professor knew that I was in a lot of pain, because I had explained to her that I was unable to give my speech and frankly it has not been super difficult to read my pain levels lately, because I just feel absolutely miserable and can barely go two minutes without visibly wincing from intensified pain somewhere in my body. She asked our small group a question and all of the members of the group looked at me to answer (since they had not paid any attention whatsoever to our assignment), and my professor, realizing what was happening, said, "I need someone to answer who didn't write up on the board" to strategically work me out of the running for this response. She was quick-thinking and respectful, two of my favorite qualities. I looked at her and mouthed "thank you" without even consciously thinking about it. She offered a slight, knowing smile and awaited answers from the boys in my group.

After class, I went up to her to apologize for being unable to deliver my speech for the fourth class in a row. I offered to bring her my health documentation. Refusing medical proof, she asked, "How about you just keep breathing?"

I am unsure whether or not she heard what the guy in my group so insensitively told me, but it was a shattering contrast, possibly the only affirming way to leave the classroom. I will admit that over the past few days I have been thinking much more of the guy's comment than of my professor's. I wish that I had the ability to focus only on what is uplifting, but his comment caused my heart to sink, not just for myself but for all people living with chronic pain and chronic illnesses.

All my classmate knows is that my voice was on-and-off for three weeks. He has no idea about the juvenile arthritis, the severe muscle pain, the costochondritis, the fevers, the lung inflammation, the upcoming jaw procedure, the upcoming sinus surgery, the semester I spent with strep throat, or the semester I spent with a combination of severe asthma, allergies, and sinusitis. He has no idea that I went to the doctor four out of the past five days and that I am now just as well-known at the UNC campus health center as I was at Tulane's. He has no idea that I am supposed to be wearing a protective mask everywhere and that I am still at risk for more infections. He has no idea that yesterday morning I left all of my dignity in the voicemail box of the only doctor in North Carolina and any of its bordering states that specializes in exactly what I need. He has no idea that I have been prescribed 21 more days of antibiotics and 14 more days of oral prednisone, and that we have stopped checking bloodwork because we know it is going to be bad. If he knew about all of that, what would his response be? If three weeks of misery made my life unworthy of continuation in his eyes, what would he think about a year of acute illnesses, or about seven years of a chronic illness?

I went back to my dorm room after the class and laid between two cold compresses, one on my chest (I have been diagnosed with costochondritis this week and it is unbelievably painful), and one on my back and neck, where my muscles have been tight and inflamed for reasons that are not totally clear. I debated what to do next. I needed to be productive, to do readings and send emails and type out assignments. I needed to respond to text messages and send out cancellations for all of the activities my illness is causing me to miss. I needed to schedule times for my friends to hang out in my dorm with me, because I refuse to be a dorm room shut-in even if I need to be laying down with ice packs a lot of the time. My mind was stuck on the insensitive comment. I did not know what to do next.

Tuesday, September 26, 2017

It seems as though I am constantly having to remind myself that it is okay to reach out to people and ask for help. I worry about taking up my friends' time, about them thinking I am overreacting, about turning the focus to me when really I would much rather hear about their lives, their laughter, and their struggles.

I also feel like possibly the luckiest person in the world, because I barely have to reach out. This morning I woke up to several sweet messages wishing me well as I continue fighting a mystery illness and encouraging me even though my body has reached its breaking point with exhaustion.

This morning, one of my classmates in my favorite English course asked me how I was doing. I swerved around in my chair to look her in the eye. The muscles in my neck were too stiff and painful this morning to flip my head around. "Okay," I said, and before I could ask her the same question she responded.

"Just okay?"

She asked it with so much authenticity that it would have been a cardinal sin to lie. "Just okay," I said with a tight smile, and when she inquired further I vaguely admitted that "medical problems" were the underlying issue (this was definitely not the time to be like, "I'm on Day 18 of antibiotics!"). Without missing a beat, she offered all her help and entered her number into my phone. It was 7:55 in the morning, and class had not even started yet, and already I had experienced so much compassion from several different people. Arthritis sucks, and it will always suck. But not many people get to experience so much kindness within 55 minutes of waking up, and not many people get to feel so loved and so supported, and so even though my body is crumbling I feel as though there is nothing to complain about.

Just including this picture because my sister Hannah is the best, andbecause it helps to remember all of the happy, comparatively healthy times.

My favorite phlebotomist declared that he is now a part of my "fan club," along with my mom who was there with me, and I could not help but think of all the people who are cheering me on, and I went back for labs with a tired soul but a warm heart. I certainly do not deserve any sort of fan club. Every day I am absolutely floored by the kindness of the people around me. I have no idea how I ended up surrounded by so many wonderful friends. It is a privilege to experience so much grace.

Reaching out to people is an important skill to have, and one that I am learning. But right now, I am feeling very grateful to have friends who do not require me to reach out, but instead swarm in with brave intentions and ears to listen and shoulders to cry on. Friends who randomly call and ask, "How has today been?" or "How angry are we at your joints right now?" Friends who bring soup and give long hugs. Friends who include me in their shenanigans and invite me places, reminding me that at the end of the day I am still a college student.

I am better at reaching out now than I was a few years ago, and I have reached out a couple of times recently. But reaching out is exhausting, and my body has no energy. I am so overwhelmed with gratitude for all of you who have done the reaching out for me over the past few days. Thank you for reminding me that there are lovely things and lovely people in this world.

Wednesday, September 20, 2017

So here goes a long story with way too many details. Sometimes I feel like this blog could be titled, "Times I Cried," but if there is one thing we should be using the Internet for it is empathy, or at least that is what I am telling myself to convince myself that it is okay to write down and publish this.

Shout out to my parents for taking care of me tonight!

I went to bed on Saturday not feeling well at all, and by Sunday my teeth were chattering as I piled myself under 3 blankets and curled up on the couch next to my mom, feeling unbelievably cold. My fever rose up to about 102, which is quite high for an immunosuppressed girl who usually hangs out somewhere between 96-97.

On Monday, I went in with my mom to work because I had a morning appointment with an oral surgeon. Even though I was feeling absolutely awful (read: sore throat, congestion, head and neck hurting, nausea, fever, body aches) I was not about to reschedule this appointment.

I have been issued some repeated warnings throughout the past year about the rheumatoid arthritis and damage in my jaw. When I saw an ENT in New Orleans for an unrelated problem, he pressed his hands on the sides of my face and asked me to open my jaw and said, "If I wasn't looking at you, I would think you were 90 years old. This sounds like the jaw of an elderly person." Ya girl was 73 years away from 90 at the time, so this was very concerning, but there were so many crazy health circumstances stemming from the Strep Throat Crisis of Fall 2016 and the Allergy/Asthma/Sinusitis Crisis of Spring 2017 that I had to make choices about which issues to aggressively address. The ENT had me put my hands on the sides of his face while he opened and closed his jaw so that I could hear and feel the difference and compare it to my own. "You have a nice jaw," I said sadly, and we both laughed even though it was not funny.

I informed my home rheumatologist of the ENT's comments over spring break, and he ordered an MRI that showed torn cartilage and eroded bone on both sides, as well as a tear on one of the discs. At the JA Conference in August, I learned that the pain of TMJ arthritis is often not as severe as the damage being done, and this certainly rung true for me. I have pain in my jaw, but I did not think it was as damaging as the scans showed.

When I went to see my dentist/orthodontist this summer for a routine cleaning, I was surprised to hear that seeing an oral surgeon needed to be a priority, and cried as I laid in the chair, confessing to my orthodontist, "I'm just overwhelmed," with the sort of honesty that only comes when it is completely unplanned. The idea of surgery felt crushing and unexpected, and so I did what any responsible person would do in this situation: I sobbed to my parents over the phone, drove to my friend Faith's house, and convinced her to watch "Christian Mingle" on Netflix with me. The day is a bit blurry (literally, from my tears) looking back, but I think at some point I fell asleep on Faith's couch from emotional exhaustion. My dad took the next day off to go with me to an appointment, and afterward we went out to eat Lebanese food for lunch and then we went to see "The Big Sick" at a movie theater with the hope of cheering me up and distracting me from what we knew would be a scary journey ahead with my jaw. We did not realize that this movie would be about a young woman with autoimmune arthritis, but hey, we did our best.

At the oral surgery appointment, we decided to do some bilateral flushing out of debris (sounds lovely, I know) and intra-articular (straight into the joint) steroid injections, a procedure which will be done under general anesthesia on the first morning of fall break. If you are looking for fun fall break ideas and would like to watch a movie and drink smoothies with me while I recover, please hit me up. I tend to be very emotional after anesthesia/when on painkillers, so if you ever need someone to cry while watching "America's Next Top Model" with you, I'm your girl.

So anyways, in the car on Monday morning we realized that I high-key needed to see a primary care doctor because I was so weak and completely not myself. Thankfully, we were able to get in quickly, but we had to leave before I could have my bloodwork done to go to the oral surgeon appointment (feeling #blessed that campus health is connected to UNC Hospitals), where I couldn't be examined because of my acute illness. No one really wants to get near your jaw when all of your lymph nodes are enormous and you're wearing a medical mask.

I went straight back over the bridge to student health, where I waited for my blood to be drawn. Normally, I try to make friends, be cheery, smile at people, etc. when I am in waiting rooms, but let me assure you that yesterday I was doing the impossible: making that waiting area in the hallway an even bleaker place to be. I was too weak to even sit up, so I was sort of halfway laying down in this chair, with my heavy head resting on my hand and a white disposable mask covering the majority of my face (we switched them out so I could have jaw x-rays taken). The phlebotomist kept assuring me that they would be ready for me soon, and when I was finally called back he immediately leaned the chair all the way back because he could tell I was not feeling well and certainly did not need me passing out.

Not to brag but yesterday one of my phlebotomists said, "You're a strong one, Sauls" & gifted me an entire tissue box 💁🏼#chronicillness

After the blood draw, I immediately returned to student health, and this is the point of the story where I really started to lose my mind. The mono test was negative (thank the Lord, because I have no idea how I would have dealt with mono fatigue and JRA fatigue together), my white blood cell counts were all messed up, and we knew there was a sinus infection but we were unsure of what else was going on. More blood tests were ordered, as well as chest x-rays to rule out pneumonia. The word "inpatient" sent me into a spiral of tears, and when my doctor and I returned to my dad in the waiting room (my parents swapped on/off throughout the day) my white paper face mask was damp. The idea of being admitted is frankly very frightening when literally all you are trying to do is go to class and hang out with your friends, but luckily I was allowed to go home. This is the side of juvenile arthritis that it seems like no one outside of the disease understands: the severity, the fear, the pain. I have been swimming in this ocean for a while now, but the currents are still just as unforgiving.

The blood tests ordered were to test for an infection in my bloodstream, which, as you can guess, is not an ideal situation. It turns out that the blood draw process is a little bit different when you are testing for sepsis. Instead of an alcohol swab, they have to use the orange antiseptic that is used for surgical procedures to clean the area, and they have to draw from two different locations, because "blood circulates" (that is the elaborate explanation I was given by my second phlebotomist of the day). After having the chest x-rays done and putting my name in again in the labs area, I was feeling very nervous. I had already had blood drawn that day from my right arm, where my only good vein is. This right arm vein is reliable, easy to find, and generally easy to puncture. I love it, phlebotomists love it, and phlebotomists love that I point it out for them. Overall, this vein and I have a great relationship.

I assumed that the first of the next two locations would be my left arm, but it was the second of these locations that was causing me stress. I absolutely hate needles going into the backs of my hands (when I had my tonsillectomy in December I insisted that they put the IV in the good vein on my right arm), and I wasn't sure where else they might try. I tried to imagine all of the veins in which they might stick a needle, and there wasn't one place that sounded particularly comfortable.

When I was called back, the phlebotomist offered to use the same puncture site as my blood draw from earlier that day as one of the two locations. To be honest, I had no idea if this was a good idea, but she suggested it and it did not involve some strange vein in my foot or stomach or anything so I was all for it. Plus, at this point I had realized how serious the infection was and was determined to get some answers, and I was already crying so I basically had nothing to lose. I was so sick, and all I wanted to do was go home.

She scrubbed the orange antiseptic on my arms and promised me that it would wash off, although I still have rings of orange around my inner elbows today even after the most vigorous shower scrubbing my weak body could manage, so I will have to get back to you all on the validity of this claim. She stuck me twice, which unfortunately included one stick in which I involuntarily flinched so she had to move the needle around in my arm to search for the vein, and my blood went into some weird containers that already contained some other liquids. I finally left the student health center/hospital after almost five hours, equipped with instructions to rest, drink lots of liquids, take a strong new antibiotic, and drive straight to the ER if anything got any worse.

Antibiotics 2.0

Luckily, I think I am on the mend, but it has been a bit up-and-down as far as my symptoms, and I am still in a lot of pain and feeling extremely weak. We are still waiting on some of the bloodwork to come back, but we are treating in the meantime. My parents have been very accommodating and helpful, and I am lucky to be in such good hands. When my sister Hannah came home on Monday and asked me for a rap I used to memorize the amendments to the Constitution, I joked in a painful whisper, "I would help, but I might be septic." Yesterday my mom stayed home with me and we watched "The Sound of Music," which I am convinced has more healing properties than antibiotics. My dad drove me into school today, and I was able to go to my two Wednesday classes, which was a relief. I was planning on staying the night in the dorm, but after being on campus for six hours I realized that I needed to come home and try my best to continue recovering.

In the two-hour lunch gap between my classes today, I went back to my dorm room and laid down on my bed, covered by my favorite white blanket. I was planning on reading or going through email on my phone, but instead I just laid down and set an alarm. I was sleepy but couldn't fall asleep. I thought about what a social worker and patient at the JA Conference taught the young adult group, about feeling the pain instead of trying to block it out all of the time. And so I felt it, in my ankles and my knees and my hips and my wrists and my throat and my jaw and my neck and my head. I felt partially dead, like I was only half as alive as the people whose footsteps I heard in the hallway.

I am trying my best to recover. I don't know why it is so hard, or why my body can't just fight better. I still see all of the beauty in the world and am not feeling particularly sad, just frightened and disconnected from a campus that I am just now starting to call home. I wonder when this infection will be gone. I can't believe that I am on my thirteenth day of antibiotics and still have seven more days to go. Today I found myself caught up considering what my senior year self would think if she saw me. She would probably be frightened. My eyes are a bit sunken in and my lymph nodes are all swollen and I look sort of washed out. My whole body hurts and I do not feel like a college student, but rather like someone who is in a world none of my college friends have had a glimpse of, where the phone calls I receive are from nurses and I check my patient portal like it's Twitter.

I don't have any particular desire to have kids in the future, but if I do, I will tell them these stories of being sick in college. I will tell them how hard it was and how nice people are and how many tears I cried in front of medical professionals and family members and even strangers. I will tell them that even if they are passed out in the car with gauze bandaged around both arms and a wrist brace and a medical mask, they can still be strong and tough and fierce. I will tell them to compliment their phlebotomists, even if the pokes hurt, because they don't get nearly enough compliments. I will tell them to imagine themselves twirling in the Alps one day, having an unapologetic Julie Andrews moment, when their world seems to be disintegrating. I can feel myself growing wiser, in the strangest of ways, yet this feeling has come married with an unwanted awareness of my own mortality, and a deep understanding of how fragile our bodies really are.

Mostly, I just miss my friends, in the simplest of ways. I want to hear about their days and hang out with them and laugh with them. I live so close to campus but I feel like I am falling behind in making connections, considering that I have to cancel every other commitment due to an infection. When I am around them I feel quiet and limited, because I don't know how to explain how broken I have been these past few days, or if that is even a narrative they are interested in hearing in its entirety. Juvenile arthritis is a cruel disease, painful in every sense of the word.

Monday, September 11, 2017

The world is not ending. This is the sentence I repeat to myself when I catch the albuterol (a medication that reduces inflammation in my lungs) making me uncontrollably nervous and shaky. I push panic back, reminding myself that it is just the medicine making me feel this way, and try my best to think rationally and calmly.

Hawaii 2016

My world is not ending, but it is spinning a little chaotically right now. I made it to September 6th before catching my first college infection, and quite frankly I was hoping to make it much further. I went home for the weekend to rest and heal, clearcutting my entire schedule, destroying my social life in the name of recovery. It was an agonizing decision, as small as one weekend may seem. The first few weekends of the semester are so important in terms of establishing friendships and getting to know people. I decided that going home was necessary given my level of pain, but I still felt horrible sending all of the cancellation messages to people who had already carved out time in their busy schedules.

It's a drizzly Monday afternoon now, and my stomach is recovering from a night of nausea (thanks to the antibiotic I am on) while my joints are struggling to function given the chilly weather and the havoc the rest of my body is going through. I woke up feeling very weak, like if someone nudged me lightly or handed me a textbook I might collapse. Breathing is requiring an incredible amount of energy and effort. My immune system has zero fight left in it. Showering this morning brought tears to my eyes, although I am not sure what percentage of my distress is attributable to pain and weakness directly and what percentage is reflective of my frustration. I am working on a plan to reduce my exposure to germs that goes beyond the obvious measures like hand washing and avoiding sick people, but the logistics of this plan are unappealing and overwhelming.

My dad kindly drove me home after my last class earlier today, so that I can rest and then return to campus for my classes tomorrow. It is such a relief to have home so close by, but I am definitely feeling the isolation that comes with being seriously ill in college.

Canada 2012

I am meeting with two surgeons in the next week and will finish what I hope is my only round of antibiotics over the weekend. I feel frightened and too weak to withstand even the best of outcomes. I cannot help but feel like my health and college are not a good match. I cannot help but feel disappointed, in myself and in my treatment and in bacteria and in my hopefulness.

Whenever I am feeling particularly physically weak, I always have a powerful urge to go to the mountains or the beach. I imagine myself stretched out on a mossy rock, overlooking the Amalfi Coast, my hair curly and tangled from the salty mist. I long to draw crisp Appalachian air into tired lungs, curled up on a bench with a blanket, layered under sweatshirts two sizes too big. Sometimes I long for people, sometimes I long for solitude, and sometimes I long to watch people from a distance. I never long for success in these moments, I only long for peace. I long for spaces where I can breathe and soak in beauty. I long for places without any knowledge of the medical field, where words like "immunosuppression" are foreign and funny. I long to feel connected with the world I am trying so desperately to function within.

Saturday, September 2, 2017

Yesterday was one of those gloomy days, when the sky was dark and the world was wet. As many of you all know, stormy weather tends to cause arthritis flares/additional stiffness and pain, and this was certainly true for me yesterday. In the middle of my final recitation of the day, I realized that I could not make a fist without experiencing pain so excruciating that my whole face would have crinkled up uncomfortably. Walking caused me to wince. Clenching my jaw in response to the pain only made the arthritis in my jaw hurt worse. It was one of those days.

Of course, the intense rain also reminds me of New Orleans. There is nothing that I would love to do more right now than wade through foot-deep puddles on my way to the French Quarter Market, befriending a moderately intoxicated bachelorette party on the streetcar along the way. I missed my Tulane friends with heightened intensity; it was like the clouds were dumping alcohol into my open wound. When I silenced my mind and concentrated solely on the rain, I felt like I was back in New Orleans.

Polk Place - photo from www.unc.edu

I am determined not to allow arthritis to dampen my life activities, and so I was still excited to go grocery shopping with a friend yesterday afternoon and explore more of the area surrounding campus. When we stepped onto the first bus, I felt a wave of fear. It is difficult to be in large vehicles that start and stop abruptly and rattle up my bones. It is almost impossible to stay balanced when your knees bend backwards and your hips are unsteady and your fingers cannot grip tightly enough for railings to be of any use.

As I was making my way towards the back, I saw my sweet friend Annabelle. In our short conversation, she imparted that she knew the weather was hard on my joints and asked how I was feeling. I had not confessed the pain to a single soul. I felt like it was completely invisible, a boring topic that none of my friends would want to discuss. It was by no means some of the worst pain I have experienced, but it was uncomfortable and distracting. "Let me know if you need help with anything," Annabelle offered with utmost sincerity, and I knew she meant it.

My first two-ish weeks at UNC have been wonderful. I have had the opportunity to reconnect with so many friends and my classes are phenomenal. I definitely picture the next three years here as happy ones. I have found organizations and people that I love. But none of this cures arthritis, and so I am learning to cope in a new setting, with new friends and professors and places.

Thankfully, I went to bed last night not feeling too ill. A hot shower helped to reheat my joints and loosen them up. I drifted off to sleep feeling warm and cozy. More importantly, thanks to Annabelle, I drifted off to sleep feeling supported, validated, and loved.

I wonder if I will ever feel raindrops splash against my skin without thinking of New Orleans. I wonder if I will ever step into a bus without fear. I wonder if the people around me have any inkling of the pain associated with my illness. I wonder how much to tell them. Mostly, I wonder how I am lucky enough to know people like Annabelle.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!